September 13 – 19 is Invisible Illness Awareness Week. It’s a week dedicated to bringing to light many of the illnesses/diseases that people deal with day-to-day that aren’t visible at just a glance.
Back in August of 2008, a little over a month before I was supposed to marry the Italian, I went to see a brand new doctor to get a check-up. Something I hadn’t done in YEARS! I was overweight, but seemed healthy. He did some bloodwork and I got a call a week later telling me that I was hypothyroid. Essentially, my thyroid wasn’t producing enough hormone.
As soon as I got off the phone with my doctor, I called my mom in an utter panic! My crazy uncle was hypothyroid right? I’m going to turn into him! A completely incompetent, self-centered crazy person! Mom confirmed that my uncle was hypothyroid too, but I wasn’t going to turn into him as he had other issues as well. Mom wasn’t terrible surprised at my diagnosis as it explained all the weight I had suddenly gained. (I had written it off to being back working in a call center. Though I was amazed I had held off gaining tons of weight for so long, then *poof* it all appeared. It now makes sense).
I began doing research (while trying to do the last minute planning for my wedding), and everything I read pointed me towards Hashimoto’s disease. Not that I could really understand a lot of what I was reading. It all seemed to be written in gibberish. I continued going to see my GP and he would up my doseages in the goal to bring me down to a “normal person’s” level. Meanwhile, the symptoms I had read about when I first diagnosed where starting to pop up.
- Fatigue – though it was never really too bad. I just felt worn out at the end of the day. And I wanted to sleep a lot, but that’s the way I’ve always been. I LOVE my sleep! My husband noticed it more than I did.
- Crazy Week – I went to go see my GP after I had spent a week feeling like I was losing my mind. I honestly thought I was going crazy! After some questions about my family history with depression and anxiety, he put me on an anti-depressant.
- Migranes – This was a new one. Headaches lasting for days on end, and I always knew when one was coming on because hours before I would have light spots in front of my eyes. (Like you get when you look at something bright then look away. It took him a while to put me on a migrane medication and then we had to battle the insurance company, but I was put on Topomax.
- Brain Farts/CRS (Can’t Remember Shit) – More often called brain fog, but mine never felt foggy. I just couldn’t think or concentrate some days . . . I guess that’s brain fog.
- High Cholesterol – It went up and down as my TSH (Thyroid Stimulating Hormone) numbers went up and down. We battled over that one and had the same conversation over and over and over. He would put me on it, we’d get my blood work back and my numbers were fine and I would take myself off of it.
Earlier this year I finally had enough and broke up with my GP. Not for good, but he’s no longer running the thyroid show. I found a fabulous endocrinologist who not only GOT that my thyroid numbers & cholesterol were related, but he was willing to treat my entire endocrine system as a whole, not just rely on my TSH numbers.
At my last appointment we were discussing my week old blood work results (as opposed to 6 months old, like I would with my GP) and my suspicions of Hashimoto’s came up. It was confirmed. I have Hashimoto’s disease.
What’s Hashi . . .Hash . . . Hashi-who?
Hashimoto’s Disease is an auto-immune disease. Essentially, the immune system doesn’t recognize the thyroid anymore and begins attacking (though my endo said attacking is the wrong word. Sounds right to me from what I’ve read!) it with anti-bodies. It slowly kills the thyroid until it quits working altogether.
And that pretty much has exhausted my knowledge of Hashimoto’s.
Thyroid disease, be it Hashimoto’s, Grave’s Disease (the anti-immune cousin to Hashimoto’s), hyperthyroidism, or hypothyroidism, truly are invisible. It is an under-diagnosed disease and one that disguises itself as a whole spectrum of issues.
Sure, to lose weight you’re supposed to eat less and move more. But when you’re too tired to get out of bed and really aren’t eating much at all anyway, but still gaining weight . . . what do you do?
I’ve been fortunate in that I think mine was caught near the beginning. I’ve had a lot of luck with finding a doctor who treats me as a patient and not as numbers.
However, dealing with Hashimoto’s is still a daily battle. My medicine was upped and before I could get to fill my new prescription, my thyroid meds ran out. In the past week, I’ve experienced exhaustion like I have never known. (I know, I should have gotten to the pharmacy and picked them up. But you know that brain fog I was talking about earlier? Yea . . . I don’t think about it until I’m
- home in bed
- at work w/o the credit card (and my Italian doesn’t drive)
- out somewhere w/o the credit card or prescription (or I have one and not the other)
I did finally get my act together this morning and I have both! Now to remember to GO to the pharmacy. Oy!
Even on medication, my “normal” isn’t the average normal. I still struggle with irrational insecurity (lending its way to very mild paranoia at times), fatigue, and the inability to concentrate (I fondly call it my ADD). Overall, I’m lucky though. I am able to function in normal society and appear normal. Most days, I even feel normal and forget that it’s a little pill I take first thing in the morning that is helping me keep my sanity.
I’m still learning about this and how best to battle my own immune system in protection of a gland that, essentially, helps keep my body balanced. And while I may be fighting a losing battle, I’m bound and determined to stretch this battle as long as it will go and do whatever it takes to protect the little butterfly in my throat!
A few of my favorite thypeeps who I have leaned heavy on and learned a lot from:
Dear Thyroid : A website that is committed to bringing thyroid disease to the forefront and being a support community to those battling thyroid disease.
Dear Thyroid is committed to being part of the solution. As a community, we invoke change, one letter, one column, one image, one meet-up, one awareness band at a time. We are a collective, unrelenting, unstoppable movement. Join us.
Hypogirl : shhhhh . . . I absolutely love her! I have learned a lot from her podcasts and her website is full of kittehs! (Her meows are adorable!)
Mary Shomon : The Queen of Thyroid patient advocacy. I found her when I was first diagnosed with hypothyroidism and she was able to put what I was reading into English.